AAKP’s Center for Patient Research & Education (https://aakp.org/center-for-patient-research-and-education/research/) is collaborating with the FDA to foster engagement with patients, caregivers, and patient advocates throughout the development, evaluation and surveillance of medical devices in order to gain insight from patients and caregivers about their experiences living with their diseases as well as experiences with medical devices intended to diagnose and treat their medical conditions. To further this effort, AAKP asks members to take a brief anonymous survey about the devices you have used. Find the survey at https://www.surveymonkey.com/r/GGTZNKX.
Comagine Health ESRD Network 18 will hold its Annual Quality Conference 2019 in Los Angeles on July 15, 2019. Topics include:
- A Patient Panel Discussion on Patient Perspectives on Adherence to Treatment
- New Changes to the ESRD QIP and How it Impacts Facilities
- De-escalation of Disruptive Behaviors and the Social Work Role in Patient Advocacy
- CROWNWeb Question and Answer
- And More!
The program is designed for Facility Managers/Administrators, Nurses, Social Workers, Dietitians, Technicians, Medical Directors, and any other staff that would benefit from a great learning opportunity. 4.5 Nursing or Social Work CE credits are available. For details and registration see http://events.r20.constantcontact.com/register/event?oeidk=a07egas42064eea495b&llr=gfuz7mxab&showPage=true.
The Standardized Outcomes in Nephrology – Glomerular Disease (SONG-GD) study is an international initiative to identify outcomes in glomerular disease that are important to patients, caregivers, clinicians and other health professionals. This will inform the development of core outcomes that are important and relevant to measure and report in glomerular disease.
SONG-GD includes a voluntary 15-minute survey to help determine a core outcome set for glomerulonephritis trials, to be taken by anyone who meets the following criteria:
- You are 18 yrs of age or older
- You are one of the following:
- A patient with any major form of glomerular disease*, at any stage of development**
- A family or household member of a patient with any major form of glomerular disease*, at any stage of development**
- A caregiver for a patient with any major form of glomerular disease*, at any stage of development**
- A healthcare practitioner or trainee, social worker, dietitian, pharmacist, psychologist, physiotherapist, researcher, policy-maker, or other stakeholder who deals with glomerular disease
- You work in an industry that deals with glomerular disease
- *Major forms of glomerular disease include:
- ANCA vasculitis
- Anti-GBM disease
- Anti-glomerular basement membrane disease
- Anti-neutrophil cytoplasmic antibody associated vasculitis
- Complement-mediated glomerulopathy
- Focal segmental glomerulosclerosis
- Goodpasture’s disease
- Goodpasture syndrome
- Henoch-Schoenlein purpura
- IgA nephropathy
- IgA vasculitis
- Lupus nephritis
- Membranoproliferative glomerulonephritis
- Membranous nephropathy
- Minimal change disease
- **Stages of kidney disease development include:
- Normal kidney function
- Chronic kidney disease
- ESRD, dialysis, or transplant
Answers will be completely anonymous and analyzed only in combination with other responses. Find the survey at https://sydneypublichealth.au1.qualtrics.com/jfe/form/SV_djzDXYqzIQ0dMGN. You will be asked for your name and email address so SONG-GD can send you a short follow-up survey.
CMS has commissioned UM-KECC to assemble 10-20 volunteers for a Technical Expert Panel (TEP) to formulate a process for periodically resetting ESRD clinical quality Star-Rating criteria so that the Ratings continue to differentiate facility quality of care when treatment-quality trends reduce the variation between facilities. Volunteers will include patients, caregivers, ESRD subject matter experts, methodologists, and specialists working on dialysis QI and healthcare disparities. The TEP will require a one-day in-person meeting in Baltimore in June, plus 3-7 conference calls before and after. Nominations must be submitted by April 5, 2019. The current call for nominations doesn’t mention it, but past TEPs have reimbursed travel expenses. For details and nomination forms, see https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/MMS/TEP-Currently-Accepting-Nominations.html#a0305.
Northwest Renal Dietitians will hold their 2019 Annual Conference March 7-8, 2019 in Portland OR. Topics include cardiac dysfunction, change motivation, diabetes management, and an evening networking event. For details see https://docs.wixstatic.com/ugd/412302_a994fa9b56104e058440b04e5eeab527.pdf.
- The online-only registration deadline is February 15, 2019, with a late fee after that date. See https://www.nwrdonline.org/registration.
- The deadline for room discounts at the Conference venue is also February 15, 2019. See https://www.nwrdonline.org/accommodations for details.
Find Conference details at https://www.nwrdonline.org/conference-overview. Volunteers are welcome and appreciated. NWRD includes renal dietitians from British Columbia, as well as the five Network 16 states. There is no NWRD membership fee.
The ESRD National Coordinating Council will host four January webinars to introduce 2019 QIA projects, all to be held at noon PST. Find more information and register at the links provided:
- BSI January 8, 2019, https://esrdncc.org/en/events/2019/january-2019/bsi-qia-lan/.
- Home Dialysis January 15, 2019, https://esrdncc.org/en/events/2019/january-2019/home-modality-qia-lan/.
- Transplant, January 22, 2019, https://esrdncc.org/en/events/2019/january-2019/transplant-qia-lan/.
- Patient Experience of Care, January 23, 2019, https://esrdncc.org/en/events/2019/january-2019/patient-experience-of-care-peoc-lan/.
ESRD Network 16 is recruiting for new volunteers to serve on our Patient Advisory Committee (PAC). PAC members:
- Advise on Network education and outreach
- Assist with Network Quality Improvement Activity design and interventions
- Meet with Medicare (CMS) on conference calls to provide feedback from a patient perspective
Most PAC activities are conducted by phone call and email, though there are occasional opportunities for in person meetings. Any travel to in-person meetings will be funded by the Network.
Please share the Informational Flyer at https://s3-us-west-2.amazonaws.com/nwrn.org/files/PAC/Nw16PACFlyer1118.pdf, and the Application form at https://s3-us-west-2.amazonaws.com/nwrn.org/files/PAC/Nw16PACForm1118.pdf, with patients and care partners in Alaska, Idaho, Montana, Oregon, and Washington that might be interested. Application forms are due to the Network by November 26, 2018.